Newborn genetic screening for autism risk

Prospective Genetic Risk Evaluation and Assessment (PROGRESS) in Autism

NIH-funded research Columbia University Health Sciences · NIH-11176963

This project uses newborn genome sequencing plus early behavior tracking to find babies with higher genetic risk for autism and to understand parents' experiences receiving this information.

Quick facts

Grant typeNIH-funded research
Study typeNIH-funded research
Funding institutionColumbia University Health Sciences NIH-funded
Lab location1 site (New York, United States)
Project IDNIH-11176963 on NIH RePORTER

What this research studies

If your newborn is part of the New York City sequencing program, their DNA may be reviewed for rare genetic changes linked to autism and, if one is found, your child could be enrolled in follow-up visits. The team will prospectively follow about 240 infants identified with high genetic risk and track brain and early behavior milestones over time. Researchers will also study how parents experience getting genetic risk results and what supports are needed. Data from a diverse, population-based cohort will be used to try to link specific genetic variants with early neurobehavioral patterns.

Who could benefit from this research

Good fit: Ideal candidates are newborns enrolled in the NYC population-based genome sequencing program who are found to carry rare genetic variants known or suspected to raise autism risk.

Not a fit: Babies without identified high-risk genetic variants, or those with uncertain findings, are unlikely to be enrolled in the high-risk follow-up group and may not receive direct benefits from this project.

Why it matters

Potential benefit: If successful, the work could enable earlier identification of infants at high genetic risk for autism and open the door to earlier monitoring and tailored supports.

How similar studies have performed: Previous studies have linked certain genes to autism and shown early intervention helps, but using newborn whole-genome sequencing together with early behavior tracking to predict autism is relatively new and not yet proven.

Where this research is happening

New York, United States

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Conditions Autistic Disorder
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.